by Jennifer Crystal
Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at firstname.lastname@example.org.
How did you know when you were in remission?
This is a great follow-up question to my recent “My Lyme Disease is in Remission. How Do I Keep It That Way?” post. The first time my doctor said the word “remission” was in 2006, a year-and-a-half after I’d been diagnosed with Lyme disease, babesiosis, and ehrlichiosis (after eight years undiagnosed). I’d completed a year of intravenous antibiotics, had taken anti-malarial medication for the babesiosis, and had switched to only oral antibiotics and nutritional supplements.
It is important to note that at that point, I was better, but not cured. My infections were not gone; they were just quieted to a point that they were not running my life. I had regained a good deal of energy, and my brain fog had dissipated. My joint and muscle aches were completely gone, and my migraine headaches came less frequently. My insomnia was under control with medication and neurofeedback; the latter was helping to lessen the intensity of, but not eliminate, my hallucinogenic nightmares. I was doing physical therapy and could tolerate moderate exercise like riding twelve minutes on a stationary bike and doing strengthening exercises for my muscles. I still needed to pace myself and nap in the afternoons, but overall, I was having more good days than bad. I was living my life, rather than just surviving it.
That remission lasted only a few months…because I took on too much too quickly. I moved to another state, started a new job, and went off antibiotics completely. Those leaps led to a complete relapse. I was bedridden once more, unable to work, care for myself, or exercise, and I was back on antibiotics. It took two years to get back to remission.
The second time, I knew I had achieved remission because I once again was able to live my life in the context of illness, rather than having illness run my life. I was able to re-start physical therapy, and slowly worked my way up to skiing. I started volunteering, and then doing freelance work. I socialized with friends. I could live independently and care for myself, though I’d learned to accept help more often.
Besides brief flare ups, I have maintained that second remission for over a decade. To do so, I’ve had to learn to accept my illnesses, to pace myself both physically and neurologically, and to say “no.” I also maintain my health with low-dose antibiotics and other medications, nutritional supplements and homeopathic drops, adjunct therapies, exercise, good nutrition, and work-life balance. I’ve built resilience and am able to do more each year. Now, I’ve moved beyond living my life: I am thriving.
Are you symptom-free now?
Not entirely. I am in remission, and many of my symptoms are gone or greatly diminished, but I’m not cured. I still get fatigued, but it’s nothing like the shackling exhaustion that plagued me for years. I never spend a day in bed anymore, unless I’m recovering from an acute illness. I do still nap every afternoon, which allows me to maintain my stamina. I rarely get aches and pains (and when I do, I know it’s a sign of a flare-up, and usually make a medication adjustment or slow down the pace of my life for a bit). I get a migraine maybe once or twice a year. I still get brain fog when I’m especially tired or overworked. Occasionally I get burning extremities. I experience air hunger and nightsweats, signs of a babesiosis flare-up, every few months or so, and take short doses of medication to quell those symptoms. Overall, with good pacing and an understanding of my limitations, I am living a very healthy and active life.
Were you ever diagnosed with Alzheimer’s?
No, but many Lyme patients erroneously are. Lyme is considered “The Great Imitator” because its symptoms mimic so many other diseases: Chronic Fatigue Syndrome, Multiple Sclerosis, rheumatoid arthritis, dementia. Lyme can be easily misdiagnosed. While you may very well have Alzheimer’s, the memory loss or confusion you are presumably experiencing could be related to tick-borne illness. If you haven’t yet, it’s important to see a Lyme Literate Medical Doctor (LLMD) who can run specialized tests, differentiate between Alzheimer’s and neurological Lyme, and make a clinical assessment as to which one you have. To find an LLMD in your area, please visit: https://globallymealliance.org/education-awareness/find-medical-professional/.
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Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at email@example.com.